I am really puzzled because the thyroid cancer specialist said--it's up to you , you can wait and watch or have surgery. Although he said he could not conclusively say I do or do not have cancer. It seems sort of wishy -washy?
Also U/S showed 7 nodules divided between rt. and left lobes and this 3cm nodule way toward the side . The only nodule biopsied was the 3cm one.
I have let this go now based on that opinion for 4 months. What do you folks think?
I do have an appt. at Mayo scheduled in January to try to get to the bottom of this. The thought of Minnesota in January is FREEZING COLD! I have thought of putting it off. Maybe another u/s in Dec. and if no changes put it off till it's not soooo cold. Any thoughts about my FNA and plan of action?

Best wishes in your decision of what to do. It is not fun. I had a PT at Mayo at the beginning of May. If you do decide to have surgery...I would be more than happy to share my surgeon's name as he was very good and he does lots of thyroid surgeries.

Just my own opinion here...I would have the surgery as you have enough going on with your thyroid...and the only way to really know is to get it out and get it biopsied. Just my two cents

RMB-I am scheduled with Dr. Gharib as my endo and if I have surgery I will ask for Dr. Clive Grant. Was Dr. Grant you surgeon?? By chance did you see Gharib?
How did you do after the surgery? Did Mayo surgical staff and nursing take good care of you?

The reason the doctor can't give you an answer is because the only way to know if you have follicular or hurthle cell cancers is to see if the cells are encapsulated in the nodule or not by removal of the lobe.

It's different with pappillary cancer---if they see the malignant cells, they can tell you on fna (if they get enough cells to see it), if they see them, if they are cancerous they can say before you have the surgery what you have, they can't with the other cancers. It's just not possible for your doctor to give you a straight answer.

I know this is very frustrating, but I think you are doing the right thing in going to a hospital you have confidence in.

RMB-I am scheduled with Dr. Gharib as my endo and if I have surgery I will ask for Dr. Clive Grant. Was Dr. Grant you surgeon?? By chance did you see Gharib?
How did you do after the surgery? Did Mayo surgical staff and nursing take good care of you?

I did not have either doctor. I had Dr Smith for the endo and Dr Farley for the surgeon. I did great after surgery. Luckily I did not have any complications.

The surgical staff did a great job with me. I had not had any major surgery before so the whole process was an undertaking for me. Even going to the preop area was overwhelming...but the surgery people were so kind and empathetic. After surgery everyone was very attentive and they did such a great job with caring for me after surgery and overnight. If you have any questions about my experience I'll be glad to answer more....

Did someone refer you to these two doctors? Just curious to know....
RMB

RMB-When all this came up I spoke with people at the local Thyroid Cancer Assn. I was put in contact with several people who had surgery locally and after talking with a few people then they referred me to others. I heard some not so great stories about some of the local surgeons I was considering. Then I spoke with a woman who was a radiologist who had thyroid cancer and while starting with a local surgeon I was considering, she then did a search because the cancer came back and she needed additional surgery. Also she was not pleased with how things went in her first surgery. It was at a teaching hospital and the dr. and a resident(?) operated on her. On the side the dr. did -no parathyroid damage, on the other side done by the resident the parathyroid was destroyed. So I didn't want a resident doing 1/2 the job.Her case was quite complicated. In her searching she came up with these names , although she ended up at MD Anderson with Dr. Clayman for her surgeon as did some other people in the group who needed multiple surgeries. I have been to Mayo before (not for surgery)and like the way things work-very efficiently. So, I was leaning towards Mayo and the people that the radiologist had identified. I talked to my endo and she said excellent choices. She has had people go to Dr. Gharib before and felt that was the way to go.
How did you identify who you would see at Mayo? Could I ask why they only did a partial thyroidectomy? What was your situation? Why was pre op area scary--was it a huge , imposing area, or were your nerves getting to you? You say you stayed overnight. Did you have the feeling that you were in a top notch facility and that the staff was excellent? All the people I dealt with at Mayo previously were so efficient and patient oriented, I would hope the surgical exp would be like that. I am though not sure Dr. Gharib will say surgery is warranted. I will have to find out when there.

Hello osteoblast. You replied to me earlier today on Jenn34. Thank you for understanding my slight confusion. I would be interested to know what else your specialist told you. I was told that this is a very uncommon type of tumor and that the studies on it have been very minimal. I was also told that it used to be diagnosed mostly as HCC.

Jenn-I think I am as much in the dark as you are. Sorry I can't be more enlightening here. I started this thread to find out more. When I saw your thread, I thought this has been nagging at me since I had the Fna and saw the thyroid cancer specialist at a Cancer Center. He said it was my call whether I wanted to have surgery then or wait and watch.He said he could not say definitively whether I had thyroid cancer or not. As my insur doesn't cover out of state until Jan when our new policy kicks in , I thought I would wait till early next yr. I have to say my endo didn't seem shocked or concerned by the FNA report. She is though recommending Thyroidectomy, she has said she doesn't think it is cancer but can't know for sure till the thyroid is out.
Jenn-do you just have one mass/nodule or many? Do you want to write the language that was in your FNA? We can see how it compares to mine that I put at the beginning of this thread.
While others have commented here that they think I should proceed with this--I think by that they mean surgery. I wish someone could explain to us a bit more about the Hurthle cells in the FNA.

RMB-When all this came up I spoke with people at the local Thyroid Cancer Assn. I was put in contact with several people who had surgery locally and after talking with a few people then they referred me to others. I heard some not so great stories about some of the local surgeons I was considering. Then I spoke with a woman who was a radiologist who had thyroid cancer and while starting with a local surgeon I was considering, she then did a search because the cancer came back and she needed additional surgery. Also she was not pleased with how things went in her first surgery. It was at a teaching hospital and the dr. and a resident(?) operated on her. On the side the dr. did -no parathyroid damage, on the other side done by the resident the parathyroid was destroyed. So I didn't want a resident doing 1/2 the job.Her case was quite complicated. In her searching she came up with these names , although she ended up at MD Anderson with Dr. Clayman for her surgeon as did some other people in the group who needed multiple surgeries. I have been to Mayo before (not for surgery)and like the way things work-very efficiently. So, I was leaning towards Mayo and the people that the radiologist had identified. I talked to my endo and she said excellent choices. She has had people go to Dr. Gharib before and felt that was the way to go.
How did you identify who you would see at Mayo? Could I ask why they only did a partial thyroidectomy? What was your situation? Why was pre op area scary--was it a huge , imposing area, or were your nerves getting to you? You say you stayed overnight. Did you have the feeling that you were in a top notch facility and that the staff was excellent? All the people I dealt with at Mayo previously were so efficient and patient oriented, I would hope the surgical exp would be like that. I am though not sure Dr. Gharib will say surgery is warranted. I will have to find out when there.

Very interesting...I will be curious to hear how this Dr Gharib is and what you think.

My endo was a referral from our local clinic. He visits the specialty clinic once a month here in town. Not sure he is the best choice but so far we have not hit a brick wall. I asked my endo who he thought would do a great job for me with my surgery and he suggested my surgeon. Luckily he was good and did a super job. In fact when he said during the consult this exactly what I would do for my daughter, mother or wife...I got a good feeling.

My situation in a nut shell...my dentist discovered my the right half of my thyroid was swollen...went to family doctor...he ran some tests..discovered I was quite hyper..I thought it was out of control stress..went to endo..after more tests..I had a big hot nodule on the right side....biopsy came back indeterminable..it was suggested I move forward with surgery...the agreement was that if the nodule was clean I would only have the right half removed...if it was cancerous then a TT...the nodule was clean...however after the path report came back there was a very very small spot of papillary cancer in the thyroid tissue itself.....now I am on a wait and see pattern to make sure the remaining half does not start growing anything suspicious. I need to keep the thyroid suppressed so I am on levo and playing the balancing game now to find the right amount. The conculsion was that the amount of cancer found was so small I should not be worried.

The pre-op area was scary because I was a nervous basket case and yes, it was a HUGE area...I have never seen so many beds/stations before. The place ran very efficiently but in my mental state it was overwhelming! The surgical team was very kind and empathetic. I did not have time to have a drip started once I got to the area so I was crying my eyes out as they wheeled my in to the surgery room...but they were so quick once I got in there I do not remember much! Other than the anethesiologist assistant saying "get this lady a margarita"!

Yes, I did feel I was in a top notch facility. People were very professional and very patient oriented. Once I got to my room I had a nurse at my beck and call...I was very impressed with this. The night nurse was even better making sure I was taken care of. Surgery was at 7:00 am...the next day I was leaving for home by noon. But then, I did not have any complication thankfully! And I did get a couple of phone calls from the surgeon's nurse once I was home just following up to make sure I was okay. And when I called once as I had a question about my incision she returned my call within 15 minutes.

While they are at it, maybe someone can explain what follicular cells in a FNB mean? My younger daughter finally got her biopsy report. She had told me that the Dr. just said that he couldn't rule out follicular cancer but he could rule out papillary cancer from this specimen. My older daughter had papillary cancer with a follicular variant in Jan. This latest US didn't show any growth.

Take me with you to Mayo-I love the area. We lived in Fargo for 3yrs. The sun is always shining in the winter. We loved it. Just dress in layers including a hat (wool is best.) The hospitals etc keep the temp so hot. I had to wear summer clothes under my layers so I could peel off the winter clothes . Fam

RMB-Get this lady a margarita--I really dislike that kind of operating room humor.I know they mean no harm by it and think they are loosening you up. My hand surgeon and his team were that way-kind of like the humor on MASH, I find it a little unnerving when I am going to be operated on. I would rather the soft spoken , everything is going to be fine , don't worry approach.
Were you actually crying before surgery? I feel for you. Had they given you any pre op sedative that might have caused this? After my hand surgery , I was laughing and crying at the same time---they call it labile emotions. The surgeon said it is ok--you will settle down as the anesthesia clears your system.And I did settle down pretty quickly.
When you said you stayed overnight in the hosp, I thought it was the night after surgery. Sounds like it was the night before---do you know why they did that?
My appt. with the endo at Mayo is scheduled in January. He will call the shots on whether I go to surgery or not.
Any other info that you might have to share on what you went through would be very appreciated.
Sorry to hear they found something and you need to be suppressed. That doesn't sound easy. Luckily though it is not worse for you. Did they give you an option for having a total thyroidectomy ?

I just want to let you know Osteoblast that I have done a bit of research since writing a couple of hours ago, plus I have my own story.

At the very beginning of my story, after my u/s the surgeon said that is was nothing and to have a repeat u/s in six months. I was happy to go with that until I asked her this question: " if by chance it is something then will leaving it six months be a problem?" "biopsy it is then" she said. She was right on top of getting the fna, barium swallow, etc... I would encourage you, if you have not already, to rule out as much as you can on the pros and cons ie: family history, female/ male, age, etc...

My understanding is that they can't tell us anything because there are soooo few with it. I believe that less than 5% of all cancer patients have Hurthle Cell Carcinoma. I know they did a recent study up here in Vancouver but that there was only 27 patients in the study due to lack of people with this type of cell on fna. The mystery I guess is why so few? Is this a new discovery or just never previously looked at because they could not tell the difference?

My health care situation is vastly different here in Canada (for which I am very appreciative) and I already know my surgery date is for the week before Christmas. I could think of better ways to celebrate but maybe I will also loose a few pounds as I hear I will be drinking through a straw for a while. I would encourage you to really consider surgery even if it is for the sake of peace of mind because from everything I have read is that a benign HCA can turn into HCC over time if not caught early. Although I have not read all of your thread pieces, which I am sure would have probably answered some of the questions above, I know that " an ounce of prevention is worth a pound of regret".

I will also see if I can get myself a copy of the fna report for comparison to yours as I would be very interested in that myself.

Wishing you all the best in this big decision. I have appreciated your insight and will be watching out for your further threads to see how things go for you.

Jenn-Please do post your fna report. I too have done a little research tonight and did not like what I read. I agree with you completely---I want a total thyroidectomy not partial. Here in Seattle, one of the first surgeons that I saw wanted to do a partial and send it for analysis while I was on table and then take out the other side only if cancer found. My endo differs and thinks that while on the table they can't do a full report, which will take days and better to do the whole thing.Yet I cooled on the local surgeons for various reasons and will throw in my lot with the Mayo drs.
It is odd how your dr. sort of did a flip flop when you asked about waiting.
I wish you the best best best on your surgery experience and results. It is no doubt going to be a little tough on you with the holidays but...know that you have friends here to assist and be there with you.
If you find your fna I would love to compare it. Later

RMB-Get this lady a margarita--I really dislike that kind of operating room humor.I know they mean no harm by it and think they are loosening you up. My hand surgeon and his team were that way-kind of like the humor on MASH, I find it a little unnerving when I am going to be operated on. I would rather the soft spoken , everything is going to be fine , don't worry approach.
Were you actually crying before surgery? I feel for you. Had they given you any pre op sedative that might have caused this? After my hand surgery , I was laughing and crying at the same time---they call it labile emotions. The surgeon said it is ok--you will settle down as the anesthesia clears your system.And I did settle down pretty quickly.
When you said you stayed overnight in the hosp, I thought it was the night after surgery. Sounds like it was the night before---do you know why they did that?
My appt. with the endo at Mayo is scheduled in January. He will call the shots on whether I go to surgery or not.
Any other info that you might have to share on what you went through would be very appreciated.
Sorry to hear they found something and you need to be suppressed. That doesn't sound easy. Luckily though it is not worse for you. Did they give you an option for having a total thyroidectomy ?

I did not have preop sedative. I went from a room upstairs to preop where they expected my to wait 30-45 minutes. I no more and met the anesthesiologist and the surgical team and I was called in.

The surgical team was very assuring to me. They repeatedly told me that everything was going to be fine...and that they do this kind of surgery almost daily and I was in good hands etc.

Sorry I was not clear. I did stay in the hospital the night after surgery. I went in to preop at about 7:00am and I was back in my room by 11:30am. I stayed the night and was leaving by noon the next day.

I was given the option of a TT if the nodule was cancerous. Otherwise it was just a PT. The surgeon came by with the path report for the thryroid itself the following morning. They assured me it was very very small. Sometimes I just wish they had taken the whole thing as then I would not have to have that small flash of doubt in my head.

RMB----I know what you mean about not having the doubt in your head.This is why I want to have a total. But, did they actually give you the option for a total thyroidectomy OR did they say that a total would ONLY happen if they found cancer in the one lobe?
Sorry to hear no pre op, you must really have been pretty frightened to be crying--I understand though completely. Didn't a preop nurse come by and try to calm you and ask you if you wanted anything to calm down?
Thanks for clarifying that it was after the surgery that you spent the night. Some people talk about having a drainage tube in their neck incision right after surgery did you have this ?
Thank you so much for sharing what you went through. I do hope that you have no further issues. How long has it been since your surgery ? When did they have you go back after the surgery? Did you have stitches that had to come out?
ps-I meant this for RMB but had put jenn initially by mistake.
RMB-I hope you get his message!